PPI Conference Galway April 2017 - Dr Derick Mitchell
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This document summarizes the work of IPPOSI, a patient-led organization in Ireland that advocates for meaningful patient involvement in health research and policy. It discusses IPPOSI's priorities such as advocating for improved patient access to health innovation and promoting patient involvement in research and policy. It also outlines IPPOSI's activities like workshops and conferences. The document notes IPPOSI's role in several national initiatives in Ireland relating to mental health, clinical research, and health policy. It discusses the impact of the EUPATI training course in building patient leadership capacity in Ireland and other European countries.
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PPI Conference Galway April 2017 - Dr Derick Mitchell
- 1. PATIENTS – SCIENCE – INDUSTRY April 27th, 2017 Derick Mitchell, PhD
- 3. Incorporating ‘the patient voice’ in research • Hierarchical Rhetoric • ‘Walking the walk’ at the highest possible level Challenges: • Researchers want certainty and lack support • Decision-makers never want to change their processes • Patients are not trained in R&D dialogue or health policy • In Ireland, many patient orgs not focused on policy/R&D issues “The perfect is often the enemy of the good”
- 5. IPPOSI? Who?IPPOSI A patient-led organisation that works with patients, government, industry, & science to put patients at the heart of health innovation
- 6. IPPOSI Priorities 20 Actively advocate for improved + equitable patient access to Health Innovation Promote meaningful patient involvement in Health Research and Policy
- 7. Patient-led activities Health Hacks Workshops Conferences Consultations Round-tables Working Groups Training Days Rare Diseases eHealth Clinical Research Health Information Health Economics Patient Registries Biobanking
- 8. Building a new Irish healthcare + research environment 2016 – HSE Mental Health Services – Local Recovery Groups 2017 - Patient Narrative Project on Person-centered care 2017 - National Patient Experience Survey in Hospitals 2017 - National Clinical Effectiveness Committee – PPI Values 2014 - Irish Health Research Forum – PPI paper 2016/17 - Health Research Board – PPI reviewers 2017 - PPI Ignite Funding – HRB + Irish Research Council 2017 - HPRA Scientific Advice – Patient Involvement 2018 - EU Directives – Clinical Trials, Data Protection 2018 - Health Information Bill
- 9. Interest in EUPATI Training Applications for EUPATI course • 2014 – 156 applications • 2015 – 175 applications • 2017 – 154 applications EUPATI Fellows by Country (33) • 17 - United Kingdom • 9 – Ireland • 7 – Greece • 6 – Belgium • 6 – Romania • 5 – Italy • 4 – Spain, France, Hungary, Germany
- 11. Roles change as a result of EUPATI course - creating patient leaders Role Before EUPATI After Member of patient organisation, not actively involved 17% 2% Active role in a patient organisation 62% 71% Leadership role in a patient organisation 62% 71% Employee of a patient organisation 25% 23% Volunteer role in a patient organisation 60% 67% Presenting at conferences, workshops etc. 63% 83% Advising a pharmaceutical company 13% 44% Advising a regulatory agency 21% 42% Advising a reimbursement agency 4% 8% EUPATI Fellows are increasingly taking leadership roles and are engaging with pharma, regulators and HTA bodies. Role changes also imply identity shifts.
- 12. www.eupati.eu
- 13. Irish Patient Education Programme • 2017 Pilot • Training for 20 patients / patient advocates • Pilot modules • Clinical Trials • Regulatory Aspects incl. Benefit:Risk • Health Technology Assessment
- 14. Patient Narrative Project Person-Centered, Coordinated Care • A set of generic descriptors for what person-centred, coordinated care looks and feels like from the Irish service user perspective • A definition for ‘person-centred coordinated care’ that is shared, understood and used by service users and staff at all levels of the health service in Ireland • Launching on May 8th at #ICIC17 in Dublin
- 15. Generating Patient-based evidence Slide courtesy of Abigeal Jackson, CF Registry of Ireland
- 16. Take Home Messages Patient involvement can improve research quality Education + Training of both patients & researchers is key Support patient networks, communities & spread the word! @IPPOSI www.ipposi.ie
Editor's Notes
- Last year I presented on IPPOSI, and was joined by Joan Jordan – MS Ireland & EUPATI trainee, now fellow This year? I marched in the March for Science last Saturday with the 1000 others….
- Regulators and funders are doing it!
- A patient-led platform that provides a structured way of facilitating interaction between patients, government, industry, science and academia to put patients at the heart of policy and medicines development. In pursuit of this we hold workshops, discussion groups, training days and conferences on policy, legislation and regulation around the development of new medicines, products, devices and diagnostics for unmet medical needs.
- Health services in Ireland are including patient voices in decision making to a greater extent now than ever before. The HSE’s National Strategy for Service User Involvement 2008-2013, the National Patients Forum, the National Patient Experience Survey and the IPPOSI-led Patient Narrative project are examples. Furthermore, the Department of Health is working with IPPOSI and other relevant patient-led organisations in areas such as rare diseases, dementia and others. Training required to get the expertise required to contribute to research & development projects
- We are delighted to announce that we received 154 applications from 32 countries for the Third round of the EUPATI Patient Expert Training Course. With 62% of these applications coming from EUPATI countries and 38% of applications coming from non-EUPATI countries it shows continued interest in EUPATI outside of established ENPs. The Course Selection Committee is due to meet on 9 May to review all applications and successful applicants will be notifed shortly afterwards.
- Stakeholders take decisions based on evidence, not on (our) anecdotes Patient organisations are best-placed to generate patient-relevant data Graphically display charts, timelines and various representations of different measures uMotif uses the capabilities of smartphones– such as accelerometers– to perform simple diagnostics integrated with results from quizzes, timed games, etc., to measure symptoms
- Emerging patient-centered movement Not a trump card for justifying/tolerating pseudoscience Patient-centered does not mean facilitating and legitimizing the provision of unproven therapies and “magical thinking” It does not mean providing patients with unscientific, placebo-inducing treatments It does mean, among other things, respecting the patient enough to provide an honest assessment of what the best available evidence says. Healthcare providers are legally required to do so through informed consent process